Tuesday, August 23, 2016

Folly Beach

this post is written in gratitude to Teal Emyln, who has shown me such warmth, love, and art.

Over the course of the past year, I haven't given much thought as to whether or not the people in my life, from the readers of this blog to my closest friends, have believed -for lack of a better word-just how sick Lyme Disease has made me. The pain, fatigue and insomnia are so vicious and destructive when they swell that to even consider having to validate them to others is a ridiculous notion.

I know people who have struggled intensely with this issue, their level of disability and despair are challenged by the very people who should be providing them with the warmest care and most tender support.

I've managed to escape, for the most part, this particular callousness, but there will always be those whose judgement can never be avoided. If you post pictures of yourself from inside the deepest of gloom, hospital gowns, oxygen tubes, the rumpled self portrait of the third consecutive day in bed, pale skin, dark eye circles and sweat- then you're asking for pity, stuck in a self-perpetuating cycle of negativity and inactivity, driving yourself towards decay with full compliance. Just get out of the house, go for a walk, you'll feel better!

But when you project instead the image of all the things you still can do, standing in the sunlight, happy and at ease, color in your face and your hair is wet, eating at a restaurant with a friend or sitting with your back against a tree in the middle of a forest, good heavens, even exercising- then you're not so sick, are you? We knew it.

I won't go any further into it, because the last thing I want to do is set an example for other Lyme sufferers that they should ever have to feel the need to validate the new world that this illness has created for them, and all the outrage, pain and struggle that can exist inside of it. But I am becoming curious as to how my story, which has been stretching on now for over a year, is being perceived.

More specifically, I wonder how I - the old me, pre-illness- would feel reading this story if it were about someone else. Every week I meet with one or two Lyme patients, and through hearing their experiences, as well as certain excruciating moments of my own, I have been exposed to a level of suffering that the old me simply could not have understood.

I can see the old me growing frustrated with the character on this blog, the girl who keeps assuring everyone she's getting better and yet she's still not in remission, she still cannot work full time, still has no children, why isn't she working just a little harder? Her words are becoming monotonous, sometimes even inconsistent. What could she possibly be doing with her time? She must not truly want to be healthy. At this point, this has to be of her own making.

Are these the type of thoughts that would be running through my mind if I were to have read this just two years ago? I think yes, although it's painful to admit that. I've had similar notions in the past towards others whose pain completely outside my realm of understanding, whose misfortunes seemed endless, although I would never have had the indecency to question, blame, or accuse them directly.

I have a friend with a similar strain of Borrelia as I do. She is quick witted and funny, curious and smart and proactive. Recent photos show her laughing on a dock that stretches into a foggy lake in the early morning, cuddling a baby nephew at a birthday party with a look of dreamy contentment on her face. Yet she sleeps every night with a razor on her bedside table, the idea that she could choose to escape the pain and indignities of her illness being the most comforting thought to her, so soothing that it is what puts her to sleep. That is the maddening and nearly incomprehensible juxtaposition of invisible illness, and it makes sense to me if you do not understand. Two years ago, I certainly would not have understood.

These photos are from a two day trip last week to Folly Beach outside of Charleston, South Carolina. Whitney had been spending some time on the ocean after a wedding, and was feeling so renewed and healthy being so close to the water that she invited me down for a mini Lyme retreat. The past week I've been on an antibiotic "holiday"as directed by my doctor, hoping that my immune system will kick into action and do some work on its own. These holidays are not holidays at all, it was a week of extreme fatigue and spasms and a pounding heart. You may have even seen me up on Haywood Avenue, sitting down on the sidewalk every few yards as I try and walk the dog. The five hour trip to Folly Beach sounded daunting, but I knew that water and sun and a change of scenery would be a real benefit to my health overall.

We had a wonderful few days, but you probably would not have wanted to come along. Whitney's health began to crash when I arrived, and despite the slow improvement in my strength and energy that accompanied the joy of being on the ocean, I still couldn't venture more than a few minutes out of the beach house. We went swimming in the salty, sun warmed Atlantic, relishing the power of the waves crashing over our heads, and then laid down in the house with the shades drawn for an hour. Another excursion, this time to a local park on an estuary, but it was too hot and there was no shade- we paid the entrance fee but we had to leave.

The trip was not without triumphs. On the advice of one of my readers, we found our way to the enormous, ancient "Angel Oak" on Johns Island. We found a farmers market with a cooling breeze and a Venezuelan food truck, we both slept well from the intense heat of the day, we ate Cuban Food outside in a rain storm and enjoyed one another's company immensely. I was able to return to the state park in the evening, when it was overcast. On the third day we had planned to venture into Charleston to explore a local homeware store I was interested in, and stroll down Broad Street, but instead we drove home. We were both crashing quickly, and what a luxury it was to not feel guilt about ending a trip early.

I treasure these trips with Whitney, feeling such a close and almost cozy kinship with her. But the illness flared viciously for both of us upon returning home. This week, I gratefully began what should be my final, four month long protocol with the addition of Rifabutin, a brand new antibiotic for me. As soon as I was back on the killing drugs, I felt better, lighter and stronger. I am doing the work. I am doing all of the work. I want to be healthy again more than I've wanted anything else in my life- but then again, you understand that.

13 comments:

When someone with your level of vigor says they are ill, I believe them. Feel no need to justify yourself to those bereft of empathy. Your will to get out and continually experience enjoyment of your world in those moments when you have had the strength to do so has clearly fueled your soul and your body. Had you sunk into your bed even on your good days, saving back your strength against the bad, your strength overall would have ebbed. The bed is not your friend. It is a last resort. You have been wise and diligent. Keep it up!

Hang in there, lady! You're doing great. I, personally, love seeing the pictures of you out and about, enjoying life when you are able. #1 because I'm always a little jealous of your adventures and the gorgeous pictures you take. But also because,To me, it shows that you ARE a fighter and a lover of life. Don't let the haters get you down ��

I've been following your blog for a couple years now. I believe you!! And I greatly value reading about your experience with Lyme's. My hope is that, by understanding the narrative of Lyme's sufferers, I can become a doctor (of chiropractic) who can *truly* help my 'Lymey' patients. Even if only by providing spinal and extremity well-being and access to a network of other care modalities and support. <3 I'm cheering for you~ You are so brave.

I feel like you've done a wonderful job showing us the reality of your struggles. The hard time are HARD, but there are moments of triumph and joy--and I know, as a reader, that I'm always thrilled to see you able to experience those moments. They don't make me doubt the suffering that I know you're going through physically, mentally, and emotionally.

Folly Beach is where I was headed almost 3 years ago when I first started to feel my Lyme symptoms. I spent the week wondering what was going on with me, Googling and trying to figure out what these strange sensations were inside my head and my body. Why does my arm feel weak? Why has my head been hurting so much? Why do I keep waking up drenched in sweat? I rested more than week than was usual for me. I kept thinking that if I took one more nap that I’d wake up feeling better and this fog would be lifted. On the last day of my vacation I finally called my doctor back home and made the appointment that would begin my year of fighting so many doctors in order to get a diagnosis. That week in Folly was the last week of my life as I knew it. I had no idea how bad things were about to get, how much everything was about to change, how terrible of a year I was about to have. I go down there the same week every year and it’s a kind of anniversary for me now. One year since I got sick, two years, three years. Still, though, I love it there. I feel good there. I look forward to being there in a few weeks. I’m glad you got to go and enjoy it for a few days. And I most definitely believe you.

Melina, I for one, haven't doubted you for a second. And I'm glad you haven't had to deal much with any other doubters to date. I can also appreciate your introspection about the questions your former self might ask your current self. I have often wondered about how my former self (the one before my daughter with Down Syndrone was born) would respond to my current self's description of my life with my sweet amazing girl. How would I treat her? How would I interact with other special needs moms? I didn't know anything about Down Syndrome before she was born-I was clueless! I fear my two 'selves' wouldn't even be friends now! But your illness and my daughter have allowed us to grow and learn and develop a greater compassion for others... especially those that might be suffering, or just different. Therein lies a great gift. You just keep on keepin' on! Love and prayers to you from Dallas!

Melina- I've been following you for a few years- inspired by your raw, frank and whimsical writing style and sense of life. I have talked about your case of Lyme's with people in my real life- baffled by the TRUTH of it all (the disease, what it does, what it takes, how it effects). I don't think I'm the only reader that wishes that could relieve the pain that you and yours are experiencing, if just a tad but. Wouldn't that be great if that was how pain worked?

Alas, it doesn't. But, you're brave. And what you describe as your "inconsistent" writing lately is a sure sign of your strength. When you think it's going well- you say it, you write it, you bring it to life. When it's not- you also share that truth.